Genetic testing at universities raises ethical dilemmas

Stanford University has joined the University of California Berkeley in inviting incoming students to participate in personal genetic testing.

According to an article in last week’s Scientific American, major ethical considerations are raised when students are given the opportunity to study their genotype: coercion, privacy, and adequately preparing students to interpret the results of their tests.Because Berkeley is offering the genetic testing kit and support services free of charge, students may be compelled to participate without fully understanding the implications of what they are doing, including associated risks. It also remains to be seen how peer pressure might influence students’ decision to participate. Stanford’s program, only available to medical and graduate students enrolled in a genomics and personalized medicine course, costs a deeply discounted $99. The tests usually cost about $600.
It is unclear how the universities will use the data that they collect. While Berkeley says the data will not be used for research, language in their consent form refers to the project as a “study.” And even though both schools promise to incinerate the DNA samples after use, results will be preserved electronically.Students may also not be adequately informed to draw conclusions from their results, which could lead to “unwise lifestyle decisions.” Berkeley plans to prepare students with a series of lectures during orientation.While the schools claim testing will be conducted purely for educational purposes, where is the distinction between treating students like students, or like research subjects? Have the schools taken the necessary precautions to balance the benefits and risks inherent in genetic testing? How might universities work to address privacy concerns, and prepare students to make decisions based on the test results?